Quality of life of people with epilepsy in Iran, the Gulf, and Near East

PURPOSE: To study the impact of epilepsy and its treatment on the quality of life of people living in Iran and in countries in the Gulf and Near East. METHODS: Clinical, demographic, and psychosocial details were collected through the use of a self-completed questionnaire distributed to patients attending hospital outpatient clinics. RESULTS: Data were collected from 3,889 people with epilepsy from 10 countries. More than 40% of all respondents had frequent seizures, and reported levels of side effects from medication were high, the most commonly reported being nervousness, headaches, and tiredness. A significant number of respondents reported changing their medications because of side effects or poor seizure control. Respondents reported that epilepsy and its treatment had a significant impact on a number of different aspects of their daily lives. A significant number of respondents felt stigmatized by their epilepsy. Reported health status was reduced when compared with that of people without epilepsy, particularly for physical and social functioning and energy and vitality, as assessed by using a generic health status measure, the SF-36. CONCLUSIONS: This is the largest study to date documenting the impact of epilepsy and its treatment in Iran, the Gulf, and Near East regions. Differences were found between the quality-of-life profiles of respondents in this study and those who participated in an earlier parallel study in Europe.     

Presurgery Expectations, Postsurgery Satisfaction, and Psychosocial Adjustment After Epilepsy Surgery

Summary: Purpose: The medical benefits of epilepsy surgery are well documented, but the psychosocial consequences of surgery have received less attention. This is especially true of the roles of expectations and satisfaction in postsurgery functioning. The present study was designed to examine the relationships between expectation, satisfaction with surgery, and psychosocial functioning in patients and their significant others before and after epilepsy surgery. Methods: The neuropsychology findings of 79 patients undergoing epilepsy surgery were examined from assessments made before, 2 months after, and 1 year after anterior temporal lobectomy (ATL) was performed. The Minnesota Multiphasic Personality Inventory (MMPI) and the Washington Psychosocial Seizure Inventory (WPSI) were used to assess psychosocial functioning. A subset of 32 patients and their significant others were followed prospectively with an additional semistructured interview to assess expectations for and satisfaction with surgery outcome. Results: Before surgery, patients showed considerable problems with psychosocial adjustment. After surgery, patients in the seizure-free group showed improvements on the psychosocial measures at both follow-ups, whereas patients with continued seizures showed improvement at the 2-month follow -up and then a decline to baseline or worse at the time of the 1-year follow-up. Subjects who were studied prospectively had high presurgery expectations for seizure elimination. After surgery, subjects whose expectations were met reported high satisfaction whereas subjects whose expectations were not met reported low satisfaction. Satisfaction with surgery was associated with better psychosocial functioning. Conclusions: Such data help elucidate the ways in which successful epilepsy surgery results in improved psychosocial functioning. The results identify ways to increase the likelihood that both patients who are seizure-free and those with reduced seizure frequency may benefit from surgery.     

Disparities in psychosocial functioning in a diverse sample of adults with anxiety disorders

Anxiety disorders are associated with psychosocial functional impairments, but no study has compared how these impairments might vary by ethno-racial status. We examined whether minority status was uniquely associated with functional impairments in 431 adults with anxiety disorders. Functioning was measured in the rater-assessed domains of: Global Assessment of Functioning (GAF); global psychosocial functioning; work, relationship, and recreational functioning; and, self-reported: life satisfaction, mental health functioning, physical functioning, and disability status. After controlling for demographic and clinical variables, results revealed evidence of disparities, whereby African Americans (AAs), particularly those with low income, had worse GAF, worse global psychosocial functioning, and were more likely to be disabled compared to non-Latino Whites. Latinos, particularly those with low income, had worse global psychosocial functioning than non-Latino Whites. Results suggest AAs and Latinos are at increased risk for functional impairments not better accounted for by other demographic or clinical variables.     

Social functioning and psychological well-being of 347 young adults with epilepsy only--population-based, controlled study from Finland

Summary:  Purpose: To explore social functioning and psychological well-being in a population-based cohort of epilepsy patients compared to matched controls.
Methods: A random sample of patients with epilepsy (N = 347) and a healthy control group (N = 430) matched for age, gender and domicile were identified through National Registry of Social Insurance Institution in Finland. The data were collected by postal questionnaire assessing various factors related to social and psychological well-being and were analyzed by using linear regression analysis to compare the study and control groups.
Results: The age at onset of epilepsy was significantly associated with the level of further education and the level of seizure control with the employment status. The patients with epilepsy and lower level of basic education had also significantly lower level of further education, employment, and fewer social relations. Some differences in psychological well-being were also seen in those with matriculation examination when compared to matched controls.
Conclusions: In young adults with well-controlled epilepsy and successful basic education, social functioning is comparable with healthy peers. The importance of all social and educational support during the time of basic education may be crucial to favorable intellectual, functional, and social development later in life. Both professional and informal support is needed in adjunct to conventional treament of epilepsy, which is emphasized.     

Clinical characteristics associated with psychosocial functioning among patients with uncomplicated epilepsy in Spain.

OBJECTIVE: To identify the clinical characteristics associated with poor psychosocial functioning among Spanish patients with epilepsy but no other neurological or psychiatric disorder. METHODS: Between May and September 2001 a survey among patients with epilepsy was carried out in 32 Spanish health care centres. The selection criteria of patients were attendance to a routine neurologist visit, to be aged between 25 and 64 and not having another additional neurological handicap (n=812). Psychosocial function was elicited through six indicators: educational level, marital status, unemployment status, restricted car driving, self-perception of epilepsy as an important limiting factor in the educational level achieved and, among unemployed, as the cause of their unemployment. Multiple logistic regression models were fitted in order to calculate adjusted odds ratios (aOR) and their 95% confidence intervals. RESULTS: After simultaneously adjusting for socio-demographic variables and clinical characteristics, the six outcomes analysed increased with seizure frequency. Moreover, all the outcomes except low educational level were also related to early age at onset of epilepsy. Although no relation with objective educational level was found, there was a strong association between early age at onset of symptoms and self-perception of epilepsy as an important limiting factor of educational achievement. CONCLUSION: These findings emphasize the need for more effective treatment of epilepsy and also highlight the importance of a psychosocial approach to management of epilepsy for patients with an early onset of symptoms in order to prevent social limitations in adult life.     

Seizure disorders in people with intellectual disability: an analysis of differences in social functioning, adaptive functioning and maladaptive behaviours

The present study is an investigation into the effects of seizure disorders/epilepsy on psychopathology, social functioning, adaptive functioning and maladaptive behaviours using a sample of 353 people diagnosed with a seizure disorder, and either severe or profound intellectual disability. People with a diagnosis of seizure disorder were found to have significantly less social and adaptive skills when compared to developmentally disabled controls with no seizure disorder diagnosis. Additionally, patterns of maladaptive behaviours were identified for individuals with seizure disorders and found to be similar to those found in people without seizure activity. The implications of the present findings are discussed.     

Executive functioning independently predicts self-rated health and improvement in self-rated health over time among community-dwelling older adults

Objectives: Self-rated health, as distinct from objective measures of health, is a clinically informative metric among older adults. The purpose of our study was to examine the cognitive and psychosocial factors associated with self-rated health.

Methods: 624 participants over the age of 60 were assessed at baseline, and of these, 510 were contacted for a follow-up two years later. Measures of executive function and self-rated health were assessed at baseline, and self-rated health was assessed at follow-up. We employed multiple linear regression analyses to investigate the relationship between executive functioning and self-rated health, while controlling for demographic, psychosocial and biological variables.

Results: Controlling for other relevant variables, executive functioning independently and solely predicted self-rated health, both at a cross-sectional level, and also over time. Loneliness was also found to cross-sectionally predict self-rated health, although this relationship was not present at a longitudinal level.

Conclusion: Older adults' self-rated health may be related to their executive functioning and to their loneliness. Self-rated health appeared to improve over time, and the extent of this improvement was also related to executive functioning at baseline. Self-rated health may be a judgement made of one's functioning, especially executive functioning, which changes with age and therefore may be particularly salient in the reflections of older adults.     

Resective surgery for intractable focal epilepsy in patients with low IQ: predictors for seizure control and outcome with respect to seizures and neuropsychological and psychosocial functioning

PURPOSE: To investigate possible predictive factors for seizure control in a group of children and adults with low IQs (IQ, < or =70) who underwent resective surgery for intractable focal epilepsy and to study outcome with respect to seizures and neuropsychological functioning. We also studied psychosocial outcome in the adult patients. METHODS: Thirty-one patients (eight children younger than 18 years) with a Wechsler Full Scale IQ of 70 or less underwent comprehensive neuropsychological assessments before and 2 years after surgery. Adults also completed the Washington Psychosocial Seizure Inventory (WPSI). Univariate analyses were used to identify variables differentiating between patients who became seizure free and those who did not. Pre- and postoperative test results were compared by t test for dependent samples. RESULTS: Forty-eight percent of the patients became seizure free, 52% of those with temporal lobe resection and 38% of those with extratemporal resection. Only one variable was predictive for seizure outcome: duration of epilepsy. In one third of the patients, who had the shortest duration of epilepsy (<12 years), 80% became seizure free. Significant improvement was seen regarding vocational adjustment in adults (WPSI). Seizure-free adults improved their Full Scale IQ scores. No cognitive changes were found in seizure-free children or in patients who did not become seizure free. CONCLUSIONS: A good seizure outcome was obtained after resective surgery in patients with intractable focal epilepsy and low IQ, provided that treatment was done relatively shortly after onset of epilepsy. No adverse effects were seen on cognitive and psychosocial functioning.     

Parent-rated emotional–behavioral and executive functioning in childhood epilepsy

The present study examined clinical and demographic risk factors associated with parent-rated emotional–behavioral and executive functioning in children and adolescents with epilepsy. The medical records of 152 children and adolescents with epilepsy referred for neuropsychological evaluation were reviewed. Results indicated that the sample displayed significantly elevated symptoms across the emotional–behavioral and executive domains assessed. Executive functioning and behavioral symptoms had the highest rates of clinically elevated scores, with lowest rates of elevated scores in internalizing and externalizing emotional problems. Only 34% of those participants with clinically significant emotional–behavioral or executive functioning difficulties had a history of psychological or counseling services, highlighting the underserved mental health needs of this population. In regard to clinical factors, the majority of seizure-related variables were not associated with emotional–behavioral or executive functioning. However, the frequency of seizures (i.e., seizure status) was associated with behavioral regulation aspects of executive functioning, and the age at evaluation was associated with externalizing problems and behavioral symptoms. Family psychiatric history (with the exception of ADHD) was associated with all domains of executive and emotional–behavioral functioning. In summary, emotional–behavioral and executive functioning difficulties frequently co-occur with seizures in childhood epilepsy, with both seizure-related and demographic factors contributing to the presentation of such neurobehavioral comorbidities. The present findings provide treatment providers of childhood epilepsy with important information to assist in better identifying children and adolescents who may be at risk for neurobehavioral comorbidities and may benefit from intervention.     

Psychosocial impact of epileptic seizures in a Dutch epilepsy population: a comparative Washington Psychosocial Seizure Inventory study

PURPOSE: The psychosocial functioning of epilepsy patients from the Netherlands was investigated and compared with results from other countries. The impact of epilepsy was also studied in two different groups of Dutch epilepsy patients, inpatients and outpatients. METHODS: The Washington Psychosocial Seizure Inventory (WPSI) was used to study the psychosocial problems of 134 Dutch outpatients and 181 Dutch inpatients. WPSI profiles were compared with those from the former German Democratic Republic (West Germany), Finland, Canada, the United States, Chile, and Japan. RESULTS: For the Dutch epilepsy patients, most of the psychosocial problems were experienced by inpatients; they had serious problems in emotional, interpersonal, and vocational adjustment, adjustment to seizures, and overall psychosocial functioning. Seizure-free outpatients, however, experienced significant problems only in the emotional adjustment area. Comparing the outcomes of various countries, Dutch outpatients and patients from West Germany and Finland experienced the least psychosocial difficulties, whereas epilepsy patients from Chile, Japan, and Canada have serious problems in most areas of psychosocial functioning. CONCLUSIONS: Patients with epilepsy experience psychosocial problems, although the amount of psychosocial difficulties depends on the seizure frequency and the culture that patients live in.     

A model for internalized stigma in children and adolescents with epilepsy

ObjectivePerceptions of stigma in children and adolescents with epilepsy are associated with higher rates of mental health problems. The purpose of this study was to test relationships in a model that identified variables most strongly associated with perceptions of stigma in children and adolescents with epilepsy. Our ultimate goal is to develop a theoretical foundation for future intervention research by identifying variables associated with perceptions of stigma that are potentially amenable to psychosocial interventions.MethodsParticipants were 173 children and adolescents with epilepsy who were between 9 and 14 years of age. Data were collected in telephone interviews. Stigma was measured using a self-report scale. Data were analyzed using structural equation modeling.ResultsGreater need for information and support, more fear and worry related to having epilepsy, greater seizure severity, and younger age were significantly associated with greater perceptions of stigma. Female gender, greater need for information and support, having at least one seizure in the past year, and lower self-efficacy for seizure management were significantly associated with more fear and worry related to having epilepsy.ConclusionsFindings suggest that perceptions of stigma are associated with two variables that are amenable to psychosocial interventions: fear and worry about having epilepsy and need for information and support. Future research should test the efficacy of interventions that reduce fear and worry, provide information about epilepsy, and reduce need for support.     

Effects of psychosocial functioning,depression, seizure frequency,and employment on quality of life in patients with epilepsy

This study aimed to investigate the quality of life (QOL) in patients with epilepsy and its correlation with psychosocial impact, depression, seizure-related items, and living circumstances. One hundred two patients who visited the epilepsy clinic at Nagoya City University Hospital participated in this study. We used the Quality of Life in Epilepsy Inventory-31-P (QOLIE-31-P) as a measure of QOL, the Neurological Disorders Depression Inventory for Epilepsy (NDDI-E) as the screening instrument for rapid detection of major depression, and the Side Effects and Life Satisfaction Inventory (SEALS) to evaluate psychosocial functioning, seizure-related items, and living circumstances. Significant correlations of the QOLIE-31-P overall score with these questionnaires and seizure-related or demographic variables were identified and analyzed by stepwise linear regression. The QOLIE-31-P overall score correlated significantly with the NDDI-E, SEALS overall score, number of anticonvulsants, frequency of focal seizure with impairment of consciousness or awareness (focal seizure), sheltered work, and employment. The stepwise linear regression showed that the QOLIE-31-P overall score was explained by the effects of psychosocial functioning, depression, frequency of focal seizure, and employment, in that order, with these factors explaining 74% of the variance. Thus, using both the SEALS and NDDI-E may be useful to detect some aspects of QOL in clinical settings.     

Impact of epilepsy in adolescence: a UK controlled study

PURPOSE: The goals of the work described here were to investigate the psychological and social impact of epilepsy on adolescents and to identify to what degree clinical and demographic variables and knowledge of epilepsy could influence psychosocial functioning. METHODS: Seventy adolescents with epilepsy were compared with healthy controls (matched for age, sex, and reading ability) on measures of self-esteem, social adjustment, depression, and obsession. Within the epilepsy group, the impact of seizure frequency, seizure severity, and knowledge of epilepsy on the above measures was also determined. RESULTS: Adolescents with epilepsy showed significantly higher levels of depression, anhedonia, and social anxiety and significantly higher numbers of obsessive symptoms than the adolescents without epilepsy. Among the adolescents with epilepsy, high seizure frequency was significantly associated with low self-esteem, and tonic-clonic seizures were specifically associated with higher levels of depression. Finally, low levels of epilepsy knowledge were significantly associated with higher levels of depression, lower levels of self-esteem, and higher levels of social anxiety. CONCLUSIONS: Epilepsy has a significant psychosocial impact on adolescents at this difficult time of life. Social support and access to appropriate information about epilepsy could be of help.     

Perceptions of Control in Adults with Epilepsy

Summary: That psychosocial problems are extant in epilepsy is evidenced by a suicide rate among epileptic persons five times that of the general population and an unemployment rate estimated to be more than twice that of the population as a whole. External perceptions of control secondary to repeated episodes of seizure activity that generalize to the social sphere have been implicated as causes of these problems. The hypothesis that individuals who continue to have seizures become more and more external in perceptions of control was tested by a survey mailed to a sample of individuals with epilepsy in a metropolitan area of the Midwest. Dependent variables were scores on instruments measuring locus of control and attributional style. The independent variable was a measure of seizure control based on present age, age at onset, and length of time since last seizure. Gender, socioeconomic status, and certain parenting characteristics were included as control variables, as they are also known to affect perceptions of control. Analysis by multiple regression techniques supported the study's hypothesis when perceptions of control was conceptualized as learned helplessness for bad, but not for good, events. The hypothesis was not confirmed when perceptions of control was conceptualized as either general or health locus of control.     

Consumer-run service participation, recovery of social functioning, and the mediating role of psychological factors

OBJECTIVE: This study examined the relationship between participation in consumer-run services and recovery of social functioning among persons diagnosed as having serious mental illness. It also assessed the role of psychological factors in mediating this relationship. METHODS: Research questions investigated were whether involvement in consumer-run services is positively associated with recovery when premorbid and demographic factors are controlled for, whether psychological factors are positively associated with recovery irrespective of involvement in consumer-run services, and whether the relationship between involvement in consumer-run services and recovery is mediated by the psychological factors. The factors examined were self-efficacy, hopefulness, and active coping strategies. Sixty participants with a past or present diagnosis of schizophrenia, schizoaffective disorder, or bipolar disorder and at least one past psychiatric hospitalization were recruited from a community mental health center and two consumer-run programs. Data were collected on hopefulness, self-efficacy, coping strategies, social functioning, and premorbid and demographic characteristics. RESULTS: Findings indicated that participants involved in consumer-run services had better social functioning than those involved only in traditional mental health services, that psychological variables were significantly associated with social functioning, and that the relationship between involvement in consumer-run services and social functioning was partly mediated by the use of more problem-centered coping strategies. Premorbid and demographic factors did not account for the relationship between psychosocial variables and social functioning, although education was a significant predictor of social functioning. CONCLUSIONS: The findings support the view that psychosocial factors may play a role in facilitating good community adjustment for individuals diagnosed as having serious mental illness.     

The impact of a single seizure on health status and health care utilization

PURPOSE: To assess the health status of patients after a single seizure. METHODS: We compared single-seizure patients (SS) with patients who had well-controlled epilepsy (WC), and uncomplicated hypertension (HT). Patients were adults screened from emergency and outpatient units of two urban teaching hospitals using predefined criteria. The 83 patients (SS, 30; WC, 29; HT, 24) were interviewed by phone about functional status (SF-36), comorbid illness, cause of illness, number of visits to health providers, and drug side effects. RESULTS: No significant differences were found among groups for health status, SF-36 domain, or occurrence of drug side effects. SS patients had significantly lower scores on vitality (p < 0.03) and a trend toward lower role physical function (p < 0.07) compared with age-adjusted population norms. SS reported more visits to health providers than WC or HT, and the number of visits remained high at interview 1 year later. Patient knowledge of the "reason" for the seizure was not associated with health status or number of visits. CONCLUSIONS: Health status of patients within 1 year of a single seizure is similar to that of patients with well-controlled epilepsy or hypertension, but SS patients have greater health care utilization.     

Stable psychological functioning after surgery for epilepsy: An informant-based perspective

ObjectivePsychological adjustment following surgery for epilepsy has been assessed primarily with self-report measures. In the current work, we investigated pre- to postoperative changes in various dimensions of personality and behavior from the perspective of a well-known family member or friend for 27 patients operated on for medically intractable epilepsy.MethodsFor each patient, a close family member or friend (“informant”) provided pre- and postoperative ratings on five dimensions of personality and behavior. All ratings were collected during the chronic epoch of recovery, when personality and behavior of the patients are relatively stable. Self-report measures were also used to examine the relation between self-report and informant-report assessment of psychological adjustment. Lastly, the relation between seizure outcomes and psychological adjustment was investigated.ResultsPersonality and behavior characteristics, as rated by an informant, remained stable and within a normal range of functioning following surgery for epilepsy. There were no significant differences between pre- and postoperative levels of executive functioning, social behavior, hypo-emotionality, irascibility, or distress. Informant-ratings on levels of current depression and overall current psychological functioning were significantly related to patient reports of current depression and global personality characteristics derived from the MMPI-2 (e.g., psychasthenia, schizophrenia, hypomania, psychopathic deviation, social introversion). There was no significant relationship between seizure outcome and psychological adjustment.SignificanceInformant-based reports on psychological adjustment following surgery for epilepsy provide a unique perspective on important aspects of the success of the intervention. Assessing outcomes beyond seizure status is important for developing a comprehensive understanding of the potential consequences of surgery for epilepsy. Based on the current work, personality and behavior seem to be stable following surgery for epilepsy, and our study provides a unique informant-based perspective on this encouraging result.     

Relationship between optimism, disease variables, and health perception and quality of life in individuals with epilepsy

Epilepsy is a relatively frequent chronic condition with an important impact on the health perception and quality of life (QOL) of patients. The aim of the present study was to identify variables related to health status perception and QOL in persons with epilepsy. Participants were 200 persons with epilepsy, 53.5% of whom were males. The mean age was 39.6; 95% had seizures, and 99% were taking antiepileptic medication. The self-report questionnaire administered assessed four types of variables: demographic, disease, epilepsy-specific optimistic attitude, and outcome variables. Results demonstrated that an optimistic orientation is related to better perception of physical and mental health status and better perception of QOL. The variables that best predict positive outcomes are optimistic orientation, perception of cognitive functioning, and perception of seizure control. These results question the importance attributed to seizure characteristics for everyday functioning and everyday life of individuals with epilepsy, and stress the importance of facilitating an epilepsy-specific optimistic orientation.     

Does psychosocial functioning improve independent of depressive symptoms? A comparison of nefazodone, psychotherapy, and their combination.

BACKGROUND: Although it is known that antidepressant treatment improves psychosocial functioning, whether such changes occur independent of depressive symptoms is not known. This study compared efficacy of nefazodone, psychotherapy, and their combination in improving psychosocial functioning in chronically depressed outpatients. METHODS: Patients with chronic forms of major depressive disorder were randomized to 12 weeks of nefazodone, Cognitive Behavioral Analysis System of Psychotherapy (CBASP), or combined nefazodone/CBASP. Psychosocial assessments measured overall psychosocial functioning, work functioning, interpersonal functioning, and general health. RESULTS: Relative to community norms, patients with chronic major depression evidenced substantially impaired psychosocial functioning at baseline. Combined treatment produced significantly greater psychosocial improvement than either CBASP alone or nefazodone alone on all primary measures. Combined treatment remained superior to nefazodone on primary measures of work, social, and overall functioning, and superior to CBASP on social functioning when depressive symptoms were controlled. Unlike the two groups receiving nefazodone, CBASP alone's effect on psychosocial function was relatively independent of symptom change. Psychosocial functioning improved more slowly than depressive symptoms, and moderate psychosocial impairments remained at end point. CONCLUSIONS: Combined treatment had greater effect than either monotherapy. Change in depressive symptoms did not fully explain psychosocial improvement. Moderate residual psychosocial impairment remained, suggesting the need for continuation/maintenance treatment.     

Alexithymia and global psychosocial functioning: a study on patients with skin disease

OBJECTIVE: The relationship between alexithymia and psychosocial functioning has been investigated in a few studies using indirect measures of adaptation. We aimed at directly evaluating the relationship between alexithymia and global psychosocial functioning, as measured by a standardised scale. METHODS: A large, consecutive sample of dermatological inpatients (N=545) completed the 20-item Toronto Alexithymia Scale and the Skindex-29 and were administered the Structured Clinical Interview for Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition Axis I disorders and the Global Assessment of Functioning (GAF) scale. RESULTS: Multiple regression analysis was used to control for likely determinants of psychosocial functioning such as age, sex, education, burden of skin symptoms, and psychiatric morbidity. The GAF score was associated with psychiatric morbidity (beta=-.63, P<.001), alexithymia (in particular, the difficulty identifying feelings subscale) (beta=-.19, P<.001), and burden of skin symptoms (beta=-.07, P<.05). CONCLUSION: Given the well-known association between poor psychosocial functioning and several behavioural risk factors for health, our study may provide a further reason for clinicians to pay attention to alexithymic features among their patients.